Update: Sept 2014

So many crazy things have happened since I last posted, I have no idea where to start. My body has been a complete wreck. A diagnosis of moderate-to-severe Fibromyalgia has been bestowed. A lump has been removed from my knee. The Morton’s Neuroma tumors in both of my feet have been injected – twice. My hormones seem to have gone off the rails, and the Fibro-fog/ADD/depression/anxiety angle of my life has been especially difficult. Add to this that fact that BOTH of my younger sisters (with whom I currently live) came down with very serious infections of – you guessed it – C.Diff. I’m told it’s impossible that I might have given it to them. I even had myself re-tested to see if I was carrying C.Diff still. The test result was negative. One of my sisters who is naturally thin, petite and pale-complexioned, tested positive on the first test and was immediately admitted to a private hospital room in which isolation procedures were fairly well-followed. She recovered within two weeks.

My youngest sister, who is of a bigger-boned, curvier build much like myself, and who has a pale complexion except for her naturally rosy cheeks, did not immediately test positive. She ran into some of the same problems I did when I was desperate to be diagnosed – her stool samples were delayed in doctor’s offices and reached the labs too late for the bacteria to be detected, or her stool samples were a combination of consistencies and were thus rejected by the testing machine, which will only test a sample of an extremely watery consistency. Another time, she had to be taken to the Emergency Room by ambulance due to weakness and excruciating gut pain – pain so bad, the doctor prescribed a morphine shot. She provided a stool sample, as requested. My sister watched as the nurse picked up the sample jar, looked at it, said “that’s not C.Diff” and then flushed the contents down the toilet and discarded the jar. All this occurred during a county-wide outbreak of C.Diff., and my sister had all of the symptoms. Like myself, however, she tends to look plump, rosy-cheeked and healthy even when she feels like she is on death’s doorstep, so it took two months before anyone would give her medication to fight the infection. By this time she was very seriously ill, and was on a completely liquid diet. Two courses of Metronidazole (Flagyl) did not work. A long course of Vancomycin did not work. A second, longer course of Vancomycin seemed to accomplish something, but my sister is still experiencing severe gut pain and diarrhea after eating. She is currently in a very similar position to where I was just after beating my own C.Diff infection a few years ago, and my heart simply breaks for her. She lost her semester in school due to the illness, and will have to repeat it.

When I was very ill and a doctor asked me if I had lost any weight, I responded with the truth: yes, I had lost approximately 30 pounds due to my extreme illness. That doctor congratulated me and said I looked great. The inappropriateness of his comment never seemed to dawn on him. A few years later, my sister experienced something very similar, and it is this attitude, I believe, that led to many of the delays that contributed to the severity of her illness and to the severity of the aftereffects with which she is now struggling. All of this served to drive me nuts, and it still does.

While all of this occurred, several other minor disasters befell our family (illnesses, job losses, the death of relatives) and the stress levels I was experiencing mounted so high, I felt like I was losing my mind. So I decided to take a break. I took a break from this blog, where so many people pour out their hearts and their suffering, and where I can do so little to help, and from several other things which, while fulfilling and positive, also raise my heart-rate and stress levels due to my natural predisposition to anxiety. Instead, I planted and garden and harvested it. I adopted a puppy. I tried to take care of those in my family who needed me. And even on the days when my fibromyalgia made it almost impossible to move, I made it a point to limp out into the heat and sun for even just a few minutes and to soak up as much Vitamin D as I could.

I am the better for taking that break, but I am sorry that I haven’t been as present on this site as I’d like to be. I’d like to thank all of those who have posted their stories on this blog and shared their experiences with one another. We all keep each other going. Keep it up.

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3 thoughts on “Update: Sept 2014

  1. Oh they just started with me stiil have diarrea and right side pain now their say its post IBS put me on fodmap diet took away pain meds and leaving me like this after 5 months of c diff now what I dont understand if mine was trigger by antibiotic then the infection was there and my body was fighting it for 5 years of agony but no one knows what it was and still dont

  2. sorry to hear of your pains. After I posted several months ago my test came back positive when I took rifaximin & neomycin for a positive SIBO lab. After an extended course of metronidazole I was doing better but then relapsed and had another positive lab. I then did ten days of fidaxomicin and my labs came back negative. I know for a fact that I still have intestinal disease because of how I feel. I started Sub Q immunoglobulins prescribed by my naturopath about a month ago. I still have brain fog, double vision, GI nausea, low energy and some IBS issues though not quite diarrhea. What I don’t know is whether my symptoms are being caused by c diff or SIBO. I am hoping to increase my immunoglobulin dose in a few weeks, and then possibly try again a trial of rifaximin for my SIBO. I am also going to try and package some of my immunoglobulins in a sustained release capsule for oral delivery. The medical community does not care to help me–does not know how to help me–leaving me to deal with my own problems.

  3. I was planning to do the transplant here in Seattle except that I have yet to get a positive third lab (or else they won’t do it), and another problem is that I have nobody to be a donor. My naturopaths have refused to be donors, and I don’t know who else to ask besides my sister who has done a lot of international travel and may be infected herself. I was then going to make an appointment with a doc in Portland who does the procedure until I found out my insurance limits me to Washington. If I can find somebody with outstanding GI health to be a donor, I will probably do it. But it is an awkward question to be asking people. In the meantime I have been taking my probiotics rectally to avoid SIBO problems.

    I am thankful that I have an excellent health insurance plan with nearly free medical, but it is upsetting that doctors are inept, ignorant, and incompetent when it comes to disease and complex illness.

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